WorriedDADNMOM

You could go his route or you could demand a longer stint of zithromax. This would cover strep or mycoplasma. I can tell you the lowering of titers via zith made huge improvements for us.....but it was coupled with a ton of other things as MomwithOCDson points out. Integrative medicine, many of us feel, has been more beneficial to garnering the kind of results in terms of behavior, tics, immune function, allergy.....etc and the list could go on. For us......a 100-150 doc visit that garners NOTHING......no results, no plan, no anything is not worth paying. We just refused payment for a lack of service. Best of luck to you!! Let us know if you need anything else.

In a word...........YES. "Around 2 years ago I had a mental health crisis/psychotic episode brought on by stress and ended up being hospitalized 4 times. I had severe depression and suicidal ideation and was diagnosed with schizoaffective disorder. Eventually my psychiatrist had me tested for inflammation and I had extremely abnormally high levels of IL-6 (a pro-inflammatory cytokine). After I took medication to reduce the inflammation and ate a gluten-free/anti-inflammatory diet the IL-6 level went down to a normal range and my depression was almost completely gone. "-------I am shocked he did this.....This is a good start. I really recommend an integrative doc that can look at the whole body......immune system, hormone levels, vit d levels, digestion issues, skin issues..........and a whole schload( ) of other stuff. It is all little "insignificant"(sarc) parts of the puzzle that will point a good doc in a good direction to get you some good help. Best of luck to you!!!!!

Assuming you give anti-histamines???? Do you have pandas or Integrative pedi on board? I will say we experienced cyclical vomiting during one of our flares over 6 months or so.....Till we got to the Integrative Pedi.

Wisdom....Move on. I really recommend NOT PAYING!!!!! If you not happy with the service or appt.....treat it like a meal or any other service.....don't pay the bill. Explain why to them and definitely move on. Try to find a pandas friendly doc/Integrative Pedi in your area. Best of luck to you!!!!

Great article!!!!!

I would echo Qannie on this. For us it was around 2 years old.....right after 2 yo MMR.....and again at 6 after 60month MMR booster. As the the chicken and egg question......I would say some genetics play a part, immune dysregulation in response to the shots could be the cause.....I don't really know. Strep and Impetigo were known things that happened previous and during major issues. Totally asymptomatic for strep. Really bad during period with very high titers to Mycplasma P....again...more immune dysregulation. Pandas/Dan doc from Ohio really helps(ed) us get to where we are at. Best of luck to you!!!

Amazing that giving kiddos what their bodies need has such a dramatic effect on behavior, focus, temperament......Truly and amazingly phenomenal. Congrats and keep at it!!!!!

Yeah, but, but ,but..........all these doc's treating naturally are a bunch of quacks!!!!!!! Major sarcasm. Glad to hear there are others treating this way with success. Makes more all the more glad I went with my gut for this mode of treatment as opposed to......Take an SSRI and call me in the morning.

Best of luck to you. God bless you and your family.

Billn, I would absolutely trust your instincts. The way our DAN/Integrative pedi said to us.....healing first...... then the absorption of what your trying to teach and change can take root.......pandas is like having a cellophane wrapped sponge. You can do CBT and other counseling.....but poking holes in the wrapper......good......keep at it........however.........but taking off the wrapper......it will absorb so much more.......kinda weird description.......I know. But for us, our worst pandas kiddo improved tremendously. Physically for sure in every way....but emotionally, cognitively, adhd improved, compassion and empathy improved, self confidence, interest in other things not previously........really in every way she improved. And this was WITHOUT CBT OR COUNSELING. Are there bad days...yep.....but the waxing and waning of this can and does get better. I really suggest doing as much as possible to prevent and treat future infections.

Puppy, where are you in the world/US?????? Maybe this will help. http://pandasnetwork.org/researchandresources/find-help/usproviders/#state

I am not sure of any docs you are requesting. Here is a list you can review. http://pandasnetwork.org/researchandresources/find-help/usproviders/#leading http://pandasnetwork.org/researchandresources/find-help/usproviders/#GEORGIA Additionally, your on here to help your kiddos.....I have 3. Yes it has been expensive. You will hit roadblocks on alternative stuff. Main stream will just want to do SSRI,CBT, anti-psychotics, and more main stream stuff. You may find one's that will do ABX, Steroids, or other immune modulating stuff. We went the natural integrative pedi route with long term ABX and all natural supplements. Yes, x3 is very costly, but I refused to do the SSRI thing and spin our wheels with main stream medicine....spending tons of money and NOT getting anywhere. We wasted almost a year on 2 pedis and and ID doc.....they wanted immunologist, therapist, neurologist.........We did not have time to waste any longer. 3-3.5 years post integrative pandas leading doc.....we are very happy with the results. Let me know if you need or want any other info......would be glad to help.

I would concur with what everyone is saying. I also sent you a PM from your PM to me. I noticed you said pasta and rice as preferred foods. In our world what our kiddos like is most likely what is hurting them. That much starch and I would consider candida or at the very least a little bit of dysbiosis. The standard of care is treating the symptoms with SSRI or therapy......etc................Most good docs with any pandas success will be more integrative and or homeopathic to treat ACTUAL bio-medical issues that are going on physiologically that are contributing to behavior, appetite, growth and muscle tone, temperament, attitude, happiness........virtually every way shape and form we improved. Let me know if you need any thing else.

I can only speak to the doc in Gahanna OH ................He is very Thorough and is VERY GOOD at treating PANDAS and Pans. PM me if you want further info.

Our PCP says menactra will be mandatory soon. It truly is life threatening.......however, only 1000-1500 people nationwide get bacterial meningitis annually. Of those 15% will die....of those remaining, another 20% will have severe side effects. So 45-100 people out of 330 million.......I am not so sure I want to do it. Just like everything else.....educate your self and make a calculated risk/decision. Gardasil........not a chance......kids.........grandkids.........EVER. Was told by DAN/Integrative Pedi treating pandas/pans......to NOT do it. Tdap.........pushing them out as far as I can. If pressed, will press back on spacing or something where I can deal with another flare.

Everyone's journey is very individual. Additionally, insurance and ability to pay is part of it. Then, the protocol that is dictated by how you pay and what the docs want to try. I would say, go with your gut. For us, we tried some counseling and may try again. But, we improved in every way shape and form with just debulking the infections, eliminating food and allergy triggers, supplementing with vitamins and minerals, controlling inflammation and then having a plan for dealing with future infections. Also, PenVK prophylaxis since strep is a known trigger for us. Best of luck to you.....you will make the right decision.

Wow, I really don't know how to answer this.....since you don't get into too many specifics with your kiddos(except what is below in your description) be cautious. I do agree with stretching them out, drawing titers and being proactive. With that said, when presenting an ID Doc and regular pedi about pandas/strep, age 6-7, associated with tics, tremors, mutism, changes in behavior, ODD, OCD, both those doctors asked if we had any adverse reactions to vaccines. Little did we realize that 18 month 1st MMR we had inconsolable crying......which would NOT classify as an adverse event per the CDC.....my gut tells me differently. We realized this from pulling her med records after the pandas pursuit began. More issues worsening after 2nd round of 60month vaccines. We are fully vaxxed up to age 11-12. Not a snowballs chance for the HPV in my girls. I think the live attenuated vaccines have the worst history. I would speak to the administering pedi and ask about it. Explaining their history and asking them for input BEFORE making any decision or appts.

Amen to Dasu.......NOTHING.....AND I MEAN NOTHING except caving in works with pandas kiddos. But caving is not productive. Amen to nicklemama too........Eggshells and rigid thinking are really the tough ones to deal with. The biggest deal was: All natural supplements for us have been huge to the point of not needing any ssri(which we considered) or CBT ....which we tried counseling......was not even needed. Are we perfect.....not yet, but everyday there is improvements. I think the whole vitamin and mineral deficiency thing for us was like giving the body everything it needs to do what it is supposed to do. Pandas/Pans is to kiddos as shrink wrap is to sponge or orbeez.......It just does not let the body do what is supposed to do. As for discipline. Remaining calm and not pushing their buttons(as they really are tripwires) is huge. Redirection. A good book is the Transforming the Difficult Child: The Nurtured Heart Approach--------google it. I hope this helps!

Yep, sounds all too familiar. I would say, can you get to a Pandas doc?? Some one literate in vitamin and mineral deficiency and how they affect behavior, mood, temperament, ocd, odd, etc............ For us Milk allergy was also very important to look at. I think these things could have triggered the cascade..........albeit.....but not being the main "cause" currently if you will. I would for sure say the pica is a sign of vitamin and mineral deficiency. While this is not medical advice I would make some recommendations. Zinc and copper are antagonists. High copper levels would not be good for behavior....meaning low zinc. Zinc is critical for good immune function. Zinc in a good Multi vitamin would be critical. Also, Zinc/Vitamin C during sick for protocol would be important. Lithium Orotate for mood stability. Probiotics for gut health. P5P vit b6-------I just realized how huge this is and why my kiddos are on it. http://www.livestrong.com/article/474532-what-are-the-health-benefits-of-p5p/ I think for me and my kiddos, there is no way I could have done this on my own and gotten the great results we have gotten. Our worst Pandas/pans kiddo improved in EVERY way, shape and form as it pertains to mood, behavior, muscle tone and strength, attention and focus, happyness and mood stability, social skills, anxiety, tic and tremors gone.......you name it ......it improved. It really has been a lifestyle change and I would not hesitate to go to our doc again. If you need further info.....PM me.

Thoughts and prayers your way. Quite a different story than yours but 6yo dd high titers to myco p and strep now 11yo. Pans/Pandas. We have seen great improvment and help with lithium orotate for mood stabilty and St Johns' Wort for mood improvments. One thing that struck me was " His blood indicates chronic sinusitis". Not sure what this means, but we had ramp up in tics with dd exposed to another family member where they had to scrap his sinus cavities where they "had found a strain of strep" I am not sure about a strep carrier, but I would wonder if this is something worth pursuing with and ENT Doc. Also, we have been using Xclear nasal spray as it is supposed to be anti-microbial, moisten the nasal passages and sinus and hopefully help things stay moistened and moving thus preventing build up of mucous and repeated colds and infections. Additonally what LLM and MOM is talking about. Getting to a good Integrative doc to do bloodwork on various vitamin and mineral excesses or deficiencies can have major effect on how serotonin production works would be another piece to look at. We have chosen to do all the "natural" stuff and have been happy with it. Our kiddo(s) just need all the high octane fuels for her to be at top peak performance if you will. Again, similar but different stories. So I hope this helps. I will send some vids via PM. Best of luck!

Depending on location, i know a very good DAN/Pandas doc in Ohio that I recommend. He can be found on the pandas resource website. http://pandasnetwork.org/researchandresources/find-help/usproviders/

mmiglio, I want to 2nd what llm is talking about...methylation. I think for us.....the most profound part was ALL THE MANY WAYS our DD improved as it pertained to OCD, tics, mood, compassion, empathy, happiness, behavior(Opp Defiance) conflict resolution, ADHD and focus......in addition to muscle tone and growth. Literally...... Ever major aspect of her life improved.....almost to the point of complete normalcy where CBT or counseling were not needed. this is slowly becoming our new normal. Easy...NO easier, ABSOLUTELY. We see leading DAN Integrative Pandas pedi in Ohio. We really chose the "natural" route. With that said.....Long term zith would be great. However, for us.....all the supplements have been huge and each one in their own way are a part of the healing and dealing with our kiddos. PM me if you want more specifics.

I am wavering too about removing PenVK prophylaxis on dd11.......at least for the summer months............ However, repeated exposure to strep(which is highly likely) and the assault of the antibodies on the brain....we will probably just keep her on it. Pen is/was always a standard treatment for rheumatic heart disease and has a long record of being safe. I am really fearful of going back to that place of severe flare or constant flare needing to dig out of it.

In a word.....Yup!!!! Really we sometimes notice it within minutes of exposure. I have two kiddos that tic(used to) around a boy diagnosed with TS and other known strep infections. It really is uncanny when it happens. They are both now on PenVk prophylaxis. Flares seem to be more milder than a few years back. However, they are still noticeable with some emotional lability and anxiety/fears. I would say this goes for viral infections too. I think anything that can be done naturally for immune support would be huge help. Vitamins, minerals, anti-inflammatory, probiotics(esp on abx).

For what it is worth. If it takes major restraint... getting it done and getting treated will be worth the stress and pain of that moment. Our kiddo took needles almost perfectly fine after starting and and vitamins and minerals from integrative pedi. Really strange how the anxiety reduces after starting treatment.